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I Will Always Regret Not Donating My Dead Son's Heart

05/09/2017 16:06 BST | Updated 05/09/2017 17:47 BST
Ali Reynolds

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It was the millennium year. My three children and I were content and loving life, sailing along in our own happy little world.

My son Lee was working as a ceiling fitter. He was 21 and he doted on his two younger sisters. Following my divorce, I was happy to take on the role of head of the household for the three of them. Life was good and we were a tight knit family. We'd all been out together one Sunday evening. I left early to take my daughter Georgie home as she had school in the morning. Lee sent me a text message at 11pm asking if I'd got home ok, and I'd replied.

Lee never made it home.

lee

He was involved in a head on collision with a van. It took emergency services over an hour to extricate him from his vehicle. When he arrived at hospital, he was still conscious and joking with the nurses. Typical Lee. Always one for the ladies.

After several hours we learnt how seriously injured he actually was. He was put in a medically induced coma, with a broken leg, broken ribs, collapsed lung, internal bleeding, and a ruptured spleen. After six long days in ITU we were approached very sensitively and it was explained that Lee was clinically brain stem dead and would never regain consciousness. Then came the question: "Would you consider donating Lee's organs?"

I had no idea what Lee would have wanted. We had never discussed organ donation. After a few moments, I remembered something that had happened just a few weeks earlier.

My daughter Georgie saw a programme about the need for organ donors and Lee took her to the doctor's surgery to get a donor card. He would not have done that if this was something he didn't agree with. So we said 'yes'. I remember thinking I didn't want Lee's life to be a waste. We went ahead and agreed to donate all of his organs and tissue - except for his heart. I think it was purely an emotional attachment issue. I would not agree to give away my son's heart.

It was a snap decision that you don't ever expect to have to make - and many years later this is a decision I have come to regret. Because of my ignorance and lack of understanding someone may have died that day waiting for a heart. I live with that guilt today.

I work to support organ donation and now I often meet transplant recipients and people still waiting for a transplant. There are currently 279 people waiting for a heart transplant including 34 children. Last year, 32 people died waiting for a heart transplant. Many more people were removed from the waiting list because they became too ill for the operation before a match could be found, and many of those people will have died. Had I known then about the need for heart donors I would not have said 'no' for a second - not for a second.

In the darkest days following Lee's death, I felt as if I was wading through glue. Life was pointless, I couldn't focus on anything, not even the simplest of tasks. Everyone around me melted into the background. I couldn't comprehend why everything in the world was continuing as normal when my only son had just died.

I used to try and stifle my sobs, as I stood in the queue at the bank or in the supermarket. I wanted to scream at everyone about what had been snatched away from me.

Then came the news of the recipients. Two people had had their eyesight restored. A grandmother received Lee's liver and the gentleman who had received Lee's kidneys had had his life dramatically changed.

That gentleman continues to lead a happy healthy life today, all these years later. Because of Lee, this man will be celebrating another birthday with his family this year. I can't begin to tell you how very proud that makes me feel. Lee's death was not a waste after all.

ali and family

Ali with her daughters and grandson.

Today, I am a passionate advocate for Safer Roads in East Sussex, sharing Lee's story in schools and colleges. And I am actively involved in promoting awareness for Organ Donation through my local hospital in East Sussex.

I have met the most incredible people, heard such fantastic stories, and seen first hand how organ donation saves and transforms the lives of desperately ill people.

My main purpose in doing what I do is to help other families before they face that heart wrenching decision, to stop other people feeling they might have made the wrong decision and feeling guilt.

We will never really come to terms with losing Lee but I feel so very grateful that we were asked and given the opportunity to donate. We get an immense sense of comfort knowing that several people have benefited and I truly believe that Lee giving that 'ultimate gift' has shaped who we are as a family today.

I feel proud of the decision and I feel Lee would have agreed with it. I would urge anyone who would consider donation to sit down with your family and talk about it. A few words now can make an extraordinary difference. Don't leave it until you are put in the position we were put it.

Life Less Ordinary is a weekly blog series from HuffPost UK that showcases weird and wonderful life experiences. If you've got something extraordinary to share please email ukblogteam@huffingtonpost.com with LLO in the subject line. To read more from the series, visit our dedicated page.